Aa
At a complete loss
I don't know hiw many doctors I have seen or tests that have been run with no definite diagnosis. I think they are guessing and only trying to treat symptoms.
I have problems with dry mouth/throat and the "tissue" diesn't feel right, not just from being dry.
Night sweats, heat intolerant, nausea, upset stomach, bloating, upper and lower abdomen, can't sleep, low BP, back pain, feeling nervous. Mouth,throat and GI issues are the worst 24/7.
What I would like to know is, what type of doctor handles these cases? I just go from soecialist to soecialist and they don't even work with each other.
I just keep getting progressively worse with no answers. I am about at the end of my rope.
I have problems with dry mouth/throat and the "tissue" diesn't feel right, not just from being dry.
Night sweats, heat intolerant, nausea, upset stomach, bloating, upper and lower abdomen, can't sleep, low BP, back pain, feeling nervous. Mouth,throat and GI issues are the worst 24/7.
What I would like to know is, what type of doctor handles these cases? I just go from soecialist to soecialist and they don't even work with each other.
I just keep getting progressively worse with no answers. I am about at the end of my rope.
I can only imagine what you are going through. And I do agree with you that the standard of care is somewhat minimal with physicians, and especially those who are considered "the greats". As a medical student I see it every day. I guess I would rather have 10 minutes with a great doc than an hour with a crapy one.
Anyway, I am in no way saying geographic tongue would even come close to explaining all of your Sx, in fact it would never. I hate to say it but your list of Sx is so long and without seeing every test result and knowing your Hx in depth I would not be able to speculate anything further. I know that is not something you want to hear and I do wish I could help you but from many miles away....
I will just encourage you to not give up and be an advocate for yourself. Keep fighting and you will find someone who can help you. I wish you the best of luck and I hope you get well soon.
Anyway, I am in no way saying geographic tongue would even come close to explaining all of your Sx, in fact it would never. I hate to say it but your list of Sx is so long and without seeing every test result and knowing your Hx in depth I would not be able to speculate anything further. I know that is not something you want to hear and I do wish I could help you but from many miles away....
I will just encourage you to not give up and be an advocate for yourself. Keep fighting and you will find someone who can help you. I wish you the best of luck and I hope you get well soon.
Thank you so much and I will do that.
However, I have been seen by dentists, GI doctors, Internist, Endocrinologist, a few ENT doctors so, one would think, at least someone would say that or figure this out.
Now, I have problems with my mouth, throat, stomach and lower intestine so,from top to bottom.
However, about 5 years ago this all started with the dry mouth issue and I have just gotten sicker and sicker. I have had blood work done, scans, biopsies, etc. I don't seem to have anything obvious so my GI doctor, who has basically given up on me, said IBS and we know that is just what they say a lot when they can't figure something out.
Due to all the abdominal pain, I messaged him and he put me back on the Xifaxan for SIBO. It was either try this or he just tells me to contact Stanford.
It is a nightmare, really. We have few, if any, good doctors here and when you do see them, they are in and out, 10 min appt protocol.
That's why I came here.
Just no quality of life like this and it affects everyone around you and I have to care for my 91-year old mother.
Thanks again. Not meaning to have a pity party, just stating the facts.
However, I have been seen by dentists, GI doctors, Internist, Endocrinologist, a few ENT doctors so, one would think, at least someone would say that or figure this out.
Now, I have problems with my mouth, throat, stomach and lower intestine so,from top to bottom.
However, about 5 years ago this all started with the dry mouth issue and I have just gotten sicker and sicker. I have had blood work done, scans, biopsies, etc. I don't seem to have anything obvious so my GI doctor, who has basically given up on me, said IBS and we know that is just what they say a lot when they can't figure something out.
Due to all the abdominal pain, I messaged him and he put me back on the Xifaxan for SIBO. It was either try this or he just tells me to contact Stanford.
It is a nightmare, really. We have few, if any, good doctors here and when you do see them, they are in and out, 10 min appt protocol.
That's why I came here.
Just no quality of life like this and it affects everyone around you and I have to care for my 91-year old mother.
Thanks again. Not meaning to have a pity party, just stating the facts.
Have you ruled out geographic tongue? There is not much research out there that explains the triggers and causes but I have done some research in the lab with HPV as it pertains to dental health and in studying some of the cases we found that geographic tongue could be caused by a few things. Mind you none of this has been studied extensively or proven at all so please don't take my observations in the lab as definitive. We saw that women and men with hormone changes or HPV and even some who were immunocompromised had an issue with geographic tongue. That may be a starting point for the mouth issue. Even if this is in fact what you have I must be the bearer of bad news but there is not currently any treatment for it. You can look it up on the internet and read more about it. There are things that trigger it etc. so just look that up and consult your doc before self diagnosing.
Thanks, have done most of that.
I am very sick today and may have to to ER. Horrible GI issues, can't even eat.
Have used Mylanta, pepto Bismol, Xanax, started the Xifaxan, nothing helping.
Calling my GI doc is useless.
I am very sick today and may have to to ER. Horrible GI issues, can't even eat.
Have used Mylanta, pepto Bismol, Xanax, started the Xifaxan, nothing helping.
Calling my GI doc is useless.
Problems with a dry mouth and tongue can sometimes be from a fungal infection and also lack of Vitamin B12 and iron.
Darktarin oral gel can be purchased fairly cheaply from the pharmacist. Nystatin drops are usually on prescription only.
Did anyone take a swab from your mouth to check for a fungal problem?
Another possibility of getting a dry mouth is from either sleeping with your mouth open or having a condition like diabetes. So it is worth getting that checked out too. A blood test to check HbA1C level gives an average glucose reading in your blood over a 12 week period.
A breath test is a good idea to check for Helicobacter Pylori, sometimes a stool test is done. Blood tests for this bacteria and not reliable.
Have a healthy and balanced diet with fresh fruit and vegetables. Cut out or cut down on processed foods and sugary foods, like sweets, chocolate, cakes, biscuits etc. Instead of white bread have brown. You may find that cutting out bread and gluten type foods may be helpful to you. Eat small meals rather than a large meal in one go. Don't eat or drink for a few hours before bedtime, this will help against acid reflux. Cut down on alcohol consumption if you drink alcohol.
Drink plenty of fluids like water and cut down or cut out sugary and fizzy drinks. You may also find changing the way you cook may help too. Not having fried foods and those that are highly spiced.
Best wishes.
Darktarin oral gel can be purchased fairly cheaply from the pharmacist. Nystatin drops are usually on prescription only.
Did anyone take a swab from your mouth to check for a fungal problem?
Another possibility of getting a dry mouth is from either sleeping with your mouth open or having a condition like diabetes. So it is worth getting that checked out too. A blood test to check HbA1C level gives an average glucose reading in your blood over a 12 week period.
A breath test is a good idea to check for Helicobacter Pylori, sometimes a stool test is done. Blood tests for this bacteria and not reliable.
Have a healthy and balanced diet with fresh fruit and vegetables. Cut out or cut down on processed foods and sugary foods, like sweets, chocolate, cakes, biscuits etc. Instead of white bread have brown. You may find that cutting out bread and gluten type foods may be helpful to you. Eat small meals rather than a large meal in one go. Don't eat or drink for a few hours before bedtime, this will help against acid reflux. Cut down on alcohol consumption if you drink alcohol.
Drink plenty of fluids like water and cut down or cut out sugary and fizzy drinks. You may also find changing the way you cook may help too. Not having fried foods and those that are highly spiced.
Best wishes.
Oh, I have told so many doctors that. It is hard to explain. I do have the chronic dry mouth and throat so I know that's what they think I mean!
I still have my sense of taste, thank goodness. If you look in my mouth and throat, which many have, nothing looks malignant, etc. BUT my tongue, palate, back of my throat feel odd. I have searched and searched the Internet. Thought maybe it was Burning Tongue but that really doesn't describe it either although sometimes the back has a burning sensation. Ever had Crisco in your mouth and know how that feels after you spit it out? Sometimes my tongue feels sensitive but doesn't
look like it. See, I just can't explain it but now it is constant.
I am again starting to have bad stomach problems again, discomfort, gas, bloating and nausea. Been told I have IBS. Been tested for motility disorder. I did test positive for SIBO and went through 2 courses of Xifaxan. My GI doc here has about given up. Contacted him and he told me to try the Xifaxan again, no breath test and I didn't start it yet. Been complaining for at least 2 years about night sweats. I went through menopause years ago. Almost every morning when my body is waking up, I break out in a clammy sweat and am often nauseated.
Whatever I don't have is getting chronic and recurring. :-(
Probably more than you wanted to know.
I still have my sense of taste, thank goodness. If you look in my mouth and throat, which many have, nothing looks malignant, etc. BUT my tongue, palate, back of my throat feel odd. I have searched and searched the Internet. Thought maybe it was Burning Tongue but that really doesn't describe it either although sometimes the back has a burning sensation. Ever had Crisco in your mouth and know how that feels after you spit it out? Sometimes my tongue feels sensitive but doesn't
look like it. See, I just can't explain it but now it is constant.
I am again starting to have bad stomach problems again, discomfort, gas, bloating and nausea. Been told I have IBS. Been tested for motility disorder. I did test positive for SIBO and went through 2 courses of Xifaxan. My GI doc here has about given up. Contacted him and he told me to try the Xifaxan again, no breath test and I didn't start it yet. Been complaining for at least 2 years about night sweats. I went through menopause years ago. Almost every morning when my body is waking up, I break out in a clammy sweat and am often nauseated.
Whatever I don't have is getting chronic and recurring. :-(
Probably more than you wanted to know.
I did see one here a few months ago, one of the oddest appts I ever had! Nit a good doctor. We just don't have many good specialists around here. My Endo doctor suggested I see one at Stanford. My husband is tired of having to take me so far. I have seen GI doctors and an ENT doctor over there.
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